M.A.D in May #5: The ‘Support ME/CFS Research’ Day

May 9, 2011

Posted by Cort Johnson

Medical research is an extremely expensive pursuit – seemingly too expensive for a not very wealthy patient community to make a difference in…..or is it? We actually have abundant evidence that even small amounts of money, put into the right hands, can reap major dividends.

Working out of rented quarters, the WPI was able, working on a small research budget, to galvanize the research community with the XMRV findings. Gordon Broderick was able to turn a $5,000 grant from PANDORA into a $100,000 grant from the CFIDS Association into a multi-million dollar grant from the NIH. The CAA has been able to turn at least three small pilot studies (Broderick, Shungu, Huber) into major NIH grants and its small research project has supported many of the prominent ME/CFS researchers in the field.

Medical research is too expensive for patients to pay for large studies but patients can and have seeded studies that spark the interest of large federal funders and ultimately change the direction of ME/CFS research.

Check out a letter from Swedish Advocate Anne Ortegen proposing that each of us contribute just $10 to a Research Institute of our choice.

Donate $10 – Multiply the ME/CFS research budget!

Biomedical ME/CFS research has always been extremely underfinanced. In federal budgets around the world, ME/CFS research has been allocated either ridiculously small amounts of money, or no money at all. Recently patient advocates have analyzed just how underfinanced ME/CFS research is.

The American agency NIH (National Institutes of Health) is the world’s largest medical research funder. NIH distributes funding for different diseases on the basis of parameters such as number of patients, illness severity and societal costs in the form of health care, lost productivity, etc. For example, around $250 million per year is directed at arthritis, $800 million at obesity, $180 million at osteoporosis, $150 million at Parkinson’s disease, and $130 million at epilepsy. The figure for ME/CFS is $5 million per year.

I repeat: $5 million per year.

That figure is about 30 times smaller than it should be, looking at comparable diseases when it comes to prevalence, suffering and societal cost. MS is given a budget of $130 million, and the prevalence for MS is around half of that of ME/CFS. Lupus gets $110 million. ME/CFS gets $5 million.

Research has shown that ME/CFS is costing the US economy around $20 billion per year. Asthma costs about the same, and gets $250 million in the yearly research budget from the NIH. Again: ME/CFS – $5 million.

Among the 214 disease categories in the budget of NIH, ME/CFS is in 206th place. The low level of funding means that only a handful of ME/CFS studies can be carried out and published each year. This is remarkable given that ME/CFS is a fairly common condition, with a prevalence of around 1 person in every 200. There are approximately 1 million ME/CFS sufferers in the USA, which means the NIH is spending around 5 dollars per patient and year.

5 dollars per patient an year!

No wonder there are no biomarkers or effective treatments for ME/CFS. No wonder there is such little understanding of underlying disease processes. With such scarce funding the opposite would have been more surprising! In the past 25 years biomedical ME/CFS research has come up with a number of interesting findings and launched several possible theories of disease process, as well as potential subgroups.

There have been no lack of promising leads and exciting possibilities. But all too often the initial pilot studies have not been followed by larger studies or independent confirmation, due to lack of funding. Many leads have been left without proper follow-up. Many researchers have chosen a different, more lucrative and rewarding, career path.

When we hear that “there has been no proof of a biomedical cause for ME/CFS” and “in spite of decades of research, there is no cure for ME/CFS”, we should perhaps answer: “First, let’s spend as much money on biomedical research for ME/CFS as we do with other diseases, for a decade or two. Then, let’s resume this discussion.”

In spite of the low levels of funding at the NIH, the USA is still the world leader when it comes to money spent on biomedical ME/CFS research. Many countries devote no money at all to this area. In some countries, such as the UK, the government claims to be promoting ME/CFS research, but is in fact only funding research on the much broader, Oxford criteria defined “chronic fatigue”. This research is not exploring biomedical issues in ME/CFS, but trying out various psychosocial approaches to chronic fatigue, and is of no help at all to patients with actual, Canadian criteria defined ME/CFS.

This deplorable situation must change. Increased funding for ME/CFS research is absolutely necessary if we are to have a chance of one day getting better and returning to functional lives. What can we patients do?

Quite a lot, in fact. We need to come together and start raising the money needed, little by little. Even when it comes to diseases with a decent federal budget, large parts of the research is carried out with private funding. Charities are raising substantial funds for cancer, Alzheimer’s and many other diseases. We need to follow their lead. We need to start helping ourselves, by giving small donations, and then reach out to our family and friends and ask them to contribute.

It won’t take much to make a difference. Since the sum directed at biomedical ME/CFS research today is around 5 dollars per patient and year, we could easily multiply the research budget. If all ME/CFS patients would donate 10 dollars, we would have at least tripled the budget right there. If everyone asked two friends or family members to do the same, it would again multiply.

So, here’s the 2011 campaign

Donate $10 – Multiply the ME/CFS research budget!

Let’s all try to donate at least $10 to biomedical ME/CFS research, and then ask family and friends to do the same. Donations are easily made online (via a credit card of PayPal).

Please report on ME/CFS internet forums when you have made your donation, so as to inform and inspire others to do the same!

Let’s multiply the research budget 2011!

ME/CFS RESEARCH CENTERS

CFIDS Association of America (CAA)- funds a wide variety of research projects including mitochondrial dysfunction in the brain, autonomic nervous system problems, receptor upgregulation, Epstein Barr virus, endogenous retroviruses….The CAA also has built a BioBank and is building a research network.

The Dr. A Martin Lerner Foundation - supports the work of Dr. Lerner in uncovering the viral pathogenesis and cardiac problems in ME/CFS. The Foundations goal is create a molecular biology laboratory to produce diagnostic tests for subsets of CFS patients and a training Center to provide instruction for doctors to treat CFS.

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.